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Objective: To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result. Study design: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were “ screen positive and diagnosis negative” prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center. Results: At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32% -90% )-with completion of genetic counseling between CF centers. Conclusion: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.u001a
Objective: To evaluate compliance with recommendations for sweat testing / specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result. Study design: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were “screen positive and diagnosis negative” prompted family genetic counseling. parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center. Results: At each of the 5 MA CF centers, 95 % of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32% -90%) -with completion of genetic counseling between CF centers. Conclusion: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic cou nseling. u001a